Tag Archives: bloggers

Set Free

I started my morning reading a beautiful post from Our Diabetic Life in 3D titled ” Diabetes is a Sailboat”.  http://www.ourdiabeticlife.com/2011/07/diabetes-is-sailboat.html  It’s a story about how having a child diagnosed with diabetes is like putting your child in a sailboat and watching him set sail alone on the high seas.   Meri is a fantabulous  writer and mother of 4 boys, 3 of  them have Type 1 Diabetes.

And after I cried through Meri’s post, , I visited my facebook page….one of my “friends” Melinda had posted a link to a beautiful youtube video about one family’s struggle to set a young whale free from fishing nets.

As I watched that video, http://www.youtube.com/watch?v=EBYPlcSD490&feature=share

I couldn’t help but relate Meri’s blog and the Fishbach family’s challenge of freeing the whale, to the challenge that all the men, women and children who have diabetes also struggle with.  Just as this whale was trapped in the fishing net, they are tethered to diabetes.   As new and better treatments are discovered, it cuts away at the net and allows them a small taste of what it’s like to live life without diabetes, but until the entire net is removed they will struggle to manage their disease and will not be truly free.

I hope and pray that I will live to see the day when my grandson and all of you, who so bravely battle day in and day out,  can  live without needles and pumps and tubing and meters and testing blood sugars and highs and lows and complications from this crappy disease and can breach and tail slap and fin slap, (or dance and sing and shout, if you prefer)  just as the whale did when it was freed!

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Filed under Grandchildren, Hope and Health, Uncategorized

Meeting with some of my Hero’s!!

As most of you know..I am a grandmother and a Type 3 (once removed)!  That is..I do not have diabetes, my children do not have diabetes, it is my oldest grandson that was diagnosed with  Type 1 Diabetes!

As any of my friends and family will tell you, I am the definition of a Mother Hen!  Not necessarily a good thing, but none-the-less it is a part of who I am!!   “D” showed up 7 years ago and threatened a member of my family..  “D” did not just come in and  steal a part of my grandson (his pancreas), it took a piece of all of us and forever changed our family!  I HAD TO do what I could to make “D” give it back!

I volunteered with JDRF (Juvenile Diabetes Research Foundation) and started out just participating in the Walk to Cure Diabetes every year.  Then I became a JDRF Advocate and periodically wrote to my congressman asking him to please do what he could to make sure that diabetes research is funded so that a cure can be found as soon as possible.  And 2 years ago I was asked to be the Advocacy Leader.  Saying “no” is a very hard thing for me to say and thank goodness.  Being the JDRF Advocacy Leader I was invited to attend their Government Day in Washington DC.

And so it began….

At this year’s Government Day, I was introduced to the Diabetes Online Community.  Something I didn’t even know existed!  Listening to all of those young men and women talk about the DOC and the support it gives to its members , I knew I had to learn more.  I think it kind of started as a joke, but somehow this old gramma (thanks to Scott and Kerri) left DC that week with my own blog site and twitter account!

The DOC not only offers support to each other that is beyond description, it is so much more.  It is, in almost every sense of the word, FAMILY!  The members of the DOC laugh together, they cry together, they educate each other, they all love unicorns and cupcakes, they advocate, they vent their frustrations without being judged, they are there for each other 24/7, they encourage each other during tough times and they celebrate the victories!

They live their lives, day in and day out, 24/7 with no vacations from “D” and shout “YOU CAN DO THIS!”  with pride!  Each and every one of you living with diabetes are my heroes!

I am so grateful to George http://ninjabetic.squarespace.com

for inviting me to a D meet-up last Saturday. He is going to be speaking to some of our advocates next month about the DOC and I am so excited!

I got to see Scott http://scottsdiabetes.com/

and not only thank him again for setting me up with my own blog and twitter accounts, but I got to get one of his famous “BIG HUGS”!  He is for sure, one of my biggest heroes!!!

And I got to meet Jenny and her husband http://web.me.com/wyldceltic1

who loves Mac’s, her dogs and music!  She definitely has all things “APPLE”!

and last but not least…..

Brad Slaight aka “Meter Boy” http://www.captainglucoseandmeterboy.com/

who kept us laughing the whole time!  (Not to mention he is “half the man he used to be”!)

Thank you all for your courage, commitment and dedication to the DOC and  for making me feel so welcome at your table!

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Filed under Diabetes online Community, Government Day 2011, Grandchildren, JDRF Walk to Cure, Spreading Awareness, Thank you, Uncategorized

OPEN YOUR EYES TO DIABETES

Last week I attended a JDRF Corporate Breakfast hosted by Rob Savage, the COO of Taco Bell and father of a son with Type 1 Diabetes.

Rob is the corporate chair for our Orange County JDRF’s Walk to Cure Diabetes coming up in November.  We had a wonderful buffet breakfast.  Rob and several others spoke about how diabetes has affected their lives.  One of our JDRF mom’s read a moving poem by  fellow blogger,  Gary Hempleman.   We were then updated on the progress of some of the JDRF funded research going on, and in conclusion,  they played a great video that shares a little about what it’s like living with diabetes.  It  seemed to make an impression on most all of the people in the room.

The event lasted less than an hour and was a big success.  Through this breakfast JDRF was able to engage new organizations and corporations to join in our quest to find better treatments for diabetes and a CURE!

Our local JDRF chapter just released that video on youtube.  Thought you all might like to view it as well.   http://bit.ly/kr9Ukk

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Filed under Spreading Awareness, Uncategorized

D-Blog #1 Admiring Our Differences

Since I was introduced to the DOC a little over a month ago, I’ve not found many (in fact, I haven’t come across any)blogs by grandparents of anyone with diabetes of any type.

That means that every post I read from each and every blogger is coming from a different perspective than mine.

I do not have of diabetes.   I am not a parent of a child or adult with diabetes.   I am not a spouse of a person with diabetes.  I am not in the medical field.  But I am the grandmother of a wonderful young man with Type 1 Diabetes and I desperately want to do what I can to help make his life easier until a cure is found!  I want to understand how his body works without a useful pancreas and I want an insight to what he might be feeling, but not sharing with us.  I want to make sure that what I say and do, will be a benefit, not add to his struggles that come with living with this disease that never lets you let your guard down or let’s you take a day off!

I have learned that sometimes, no matter how hard you try, or what you do,  your bg #’s are not going to cooperate!

I  have learned that what works for great bg #’s today might not (and probably won’t) work tomorrow.

I have learned that there is no good type of diabetes.

I have learned that many in the medical field have a lot to learn about diabetes!

I have been reminded that our children with diabetes, grow up to be adults with diabetes.

I have learned that the Diabetes Online Community (DOC) is made up of some very incredible men and women willing to share many of their struggles and innermost thoughts about diabetes and living with it.  They do this so that no one suffering with diabetes, of any type, will ever have to feel alone, they do this to enlighten those of us who do not have diabetes and along the way, they have made friendships that will last their lifetimes!  They do this day in and day out, through bad times and through good times.

I have learned that what you say can stay with someone a lifetime.

I have learned that effects from a single high or one low can impact your body for days…not just hours.

I have learned the incredible power of social media.

I have learned about the band, Blunt Lancet!

I have learned about the unicorn!!

and the power of a cupcake!!

Thank you all so very much for making this grandma feel a part of this most inspiring community!!!

You are all my HEROS!

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Filed under D-Blog Week, Diabetes online Community

Bloggers Round Table

Sunday afternoon, March 13, 2011

After lunch, we were broken up into 2 groups.  Half of the advocates went downstairs to meet with one group of bloggers and the other half  of us stayed on the 16th floor and were going to learn exactly what the Diabetes Online Community (DOC) was all about,  from the rest of the bloggers.  Fortunately for me, the group I had been assigned to, included Scott and Kerri who had set me up with my own blog site yesterday!!   In addition, it just so happened to be the presentation that JDRF was going to video feed live out to the world!

Thankfully JDRF  and their fantastic staff there in DC, had the foresight to know that the DOC is growing by leaps and bounds.   It is imperative that we realize that our children are our future, and that our children grow up to be adults with Type 1 and that as adults they need to know they are not alone and that we are fighting for their cure too!   That is where these wonderful young men and women bloggers come in!  Before this presentation, just in talking to them, they had told me that they all had decided to start blogging about Type 1 Diabetes because they felt alone.  I know that none of us would ever want anyone, but especially our loved ones to feel that way.   With that said, I will move on to the presentation details!

First, I let me introduce the 5 bloggers and tell you a little about each them.  I would also like to invite you to check out their blog sites by clicking on their link listed under my blogroll.

Scott Johnson (Scotts Diabetes) was diagnosed with Type 1 in April, 1980.  He started blogging in 2004 and his writing evolved into a way for him to cope with his diabetes.

Kerri Sparling (SixUntilMe) has been living with Type 1 Diabetes for over 24 years, just before she started the 2nd grade.  She manages her diabetes and life by the mantra “Diabetes doesn’t define me, but it helps explain me”.

Kim Vlasnik (Texting My Pancreas) was diagnosed in 1986 at the age of 6.  Until late 2009 diabetes wasn’t something she shared very often.  It was her own battle and in her mind, no one else she know “got it”.

Cherise Shockley (Diabetes Social Media Advocacy) was a newlywed with her husband in Iraq when she diagnosed with Latent Autoimmune Diabetes in Adult (LADA) at the age of 23

Kelly Kunik (Diabetesaliciousness) was diagnosed on Halloween 33 years ago while in the 3rd grade.  Sadly she comes from a long line of Type 1’s.

All of the bloggers expressed their appreciation to  JDRF for the opportunity they have given them and were eager to meet new friends and build new connections, in addition to  explaining to us, what this whole Social Media stuff is and what the Diabetes Online Community is all about!

Social Media is the use of web-based and mobile technologies (cell phones, etc).  It is available 24/7, has relatively no cost involved, is global and it connects people one-to-one or in groups.    The Diabetes Online Community consists of people with an interest in diabetes and use social media to connect to each other by means of:

  • Blogs
  • Facebook
  • Twitter
  • Podcasts, radio, cable TV
  • Other evolving social media platforms

With each of these forms of  online communication, you can find specific diabetes communities or specific topics, you can interact and contribute or you can just read what others have to say.  Effective use of these tools, not only benefits the online community, it can have a huge impact on JDRF as well.  It will enable both the DOC and JDRF to spread the word about changes and initiatives, it will help reach constituents 24/7,  especially those that do not have access to a local chapter, it can provide daily touch points, it can definitely  influence decision-makers, shape conversation and most important,  inspire people to participate.

In short, use of  the Social Media will enable JDRF to reach out to ALL Type 1 Diabetics (young and old), keep them engaged, let them know they matter, contribute to mentoring them as they move through their different stages of life from childhood through adulthood, in addition to keeping JDRF’s fundamental goal of funding the research that will find a cure!

If you would like to view the streaming video taped from this presentation please click on this link. http://www.ustream.tv/recorded/13305637

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Filed under Diabetes online Community, Government Day 2011

Advocacy Awards Dinner

Saturday evening, March 12, 2011

After freshening up I headed back downstairs to the hotel foyer for a reception to meet all the other advocates that have come from all over the United States.  It is so fantastic that all 50 states, including Alaska and Hawaii are represented.   There were  many of us who were here last year, there were many new advocates that were here for the first time and there were also quite a few “boomerangs” that had been active in previous years,  took a break and are now back and ready to hit the hill again!!

It is so inspiring to me to see over 150 people, from so many different regions of the US and so many different walks of life, come together in one place with such passion. That all of them have the same goal… to advocate on behalf of so many living with Type 1 Diabetes and ultimately to find a Cure!

Dinner was served in the South Ballroom, and was followed by Vice President of Government Relations, Cynthia Rice kicking off Saturday night’s awards program.  She and Government Relations Committee Chair, Rik Kirkland introduced last year’s Volunteer Chair of Grassroots Advocacy, Lorraine Stiehl (who, by the way,  is absolutely amazing!) and she presented to us the NEW Volunteer Chair, Camille Nash  .  It was a wonderful evening celebrating the successes of the past year, and announcing of this years award winners.

  • Judy Krtek of the Kansas City Chapter received the Above and Beyond Award
  • Laurie DeSchyver from the LA Chapter won the JDRF Messenger Award
  • Michelle Freedman from the Oregon/SW WA Chapter received the Stand and Deliver Award
  • Jeanne Mansfield (that’s me!!) from the Orange County Chapter won the Thomas Edison award for her Type 1 Talk Presentation
  • Jim Caleca of the Metro Detroit/SE Michigan Chapter received the Team Builder award
  • Rookie of the Year award winners, Stacey Warnick from the Utah Chapter and  Rosemary Fuller of the Eastern PA chapter
  • Advocate of the Year, Mary Horn of the Greater Iowa Chapter
  • Laura Chisholm of the Kansas City Chapter received the At Home on the Hill Award
  • Lifetime Achievement Award went to Gary Henn of the Central New Jersey Chapter

I was surprised and honored to have received the Thomas Edison Award, but was feeling sad that my daughter-in-law Julie was not there to share it with me!   Without her help and inspiration our Type 1 Talk at the Original Fish Company in Los Alamitos, would never have happenedl.  Nor would it have been so successful without Wendi  and Vanessa who made it all possible!

I also have to mention that sitting at the table next to me was a group of  very enthusiastic young men and women who, I could see,  were texting throughout the entire awards presentation!!   At the conclusion of the presentation, several of them came over to congratulate Laurie and I and introduce themselves.  That’s when and how this whole blogging thing all began!!   They were a  group of  9 people representing the Diabetes Online Community (DOC) that had been invited to share their stories and educate us on the impact the online community has in the support of all of those living with diabetes!  As one of the oldest advocates in attendance, I could not let all these youngsters pass me by!!  And so it began…Laurie and Scott promised to get me started and here I am!!

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Filed under Government Day 2011